I Have No Real Control Over My Chronic Migraines and Fibromyalgia

No matter how hard I work to control my environment, avoid my triggers and take care of myself, I actually have almost no control over my chronic migraines and fibromyalgia. Any time either of them decide to pick a fight with me, I find myself quickly overwhelmed and completely at their mercy. They win every time. They don't care what my plans were or how much needs to get done. They just show up and start torturing me - never indicating how long they plan to continue.

My poor body has endured 9 years of intense physical and emotional abuse from these two terrorists.

Yeah, yeah. I work hard to stay positive, I have lots of blessing, I am making the most out of this bad situation - blah blah blah. All that is true but I'm also frustrated and pretty darn annoyed by the constant battle to try to feel semi-okay. It's pretty messed up that feeling semi-okay is what success looks like in my life.

This dichotomy can be confusing to experience and almost impossible to explain to others.

Whimsy Wednesday

This video made me laugh - Awkward things your parents do with technology - probably because my mom does a couple of these things.

Have a great day!

I'm Starting To Forget What It Was Like To Be Healthy

Yesterday I started gathering photographs to hang around the house. As usual, I found myself distracted by the tubs of old pictures. Seeing pictures of myself back when I was healthy and vibrant was a bit jarring. No matter how aware I am of the drastic changes my life has undergone in the 9 years since chronic migraines set in, I don't often allow myself to feel the weight of those changes. 

There I was, face to face with my old self, remember the moments from the pictures and really remembering the details of how my life used to be. Remembering how it felt to do my hair and apply make-up every day - it was no big deal - just something I did before starting a full day of work and play. Remembering how it felt to be a normal weight - eating never nauseated me back then. Remembering how it felt to be me without chronic pain and ALL the other symptoms and effects of the migraines and fibromyalgia. 

Looking at my old self I realized I'm slowly forgetting what it was like to be healthy and vibrant. My journey over the past 9 years has changed me almost as much as the chronic migraines and fibromyalgia have. I don't want to place a judgement on this observation as I don't see it as good or bad. Besides that, some of the changes are attributable to other factors. I'm now in my mid 30s instead of my mid 20s. I'm now married and living in a different state.

As much as I wish I didn't have to live with chronic pain, I do like my life and feel very blessed in other respects. Plus, facing this level of adversity really is an opportunity to build up courage and inner strength. 

What About The Snow?

So far this winter we've had plenty of cold and wind, rain and freezing rain. The holidays came and went. But we've had very little snow - basically just two dustings, neither required shoveling. I'm not exactly a huge fan of winter but one of the best parts about winter is a nice snowfall. If I can have at least 1 proper snowfall during the season then I'm a happy camper.

This was the most snow we got this winter
back in November. Didn't even cover the grass.

Snow has some real downsides around here. It doesn't take much to snarl traffic and overwhelm the DOT. They are never properly prepared and clean-up always takes too long. Schools are quick to cancel when the local weather even suggests it might happen. And yes, I do sort of judge the system. I grew up in Minnesota where even 2 ft. of snow doesn't shut anything down.

Still, a proper snowfall is magical. It's beautiful when it falls and as it rests delicately on each and every tree branch. A blanket of crisp white snow is like a pause button. It quiets the birds and seems to block out all manmade sounds. It's as if the whole world stops to watch and enjoy - so peaceful.

This may just be the migraineur in me, but I think the snow is best enjoyed when it's dark outside. A new snowfall will provide perfect ambient light once that pesky sun has gone down. Sunlight is never harsher than when it's reflecting off the snow and coming at you from all directions.

With February fast approaching I'm beginning to think I won't actually see a proper snowfall this year.

Whimsy Wednesday

A baby and a dog - the perfect ingredients for a funny video.

Have a great day! 

5 Must-Haves For A Relaxing Bath

Laying awake in bed at about 2:30am today, a prime time for random thoughts, it occurred to me that I haven't had a proper bubble bath in about 2 years. You know - a long, quiet, soak in hot water, complete with calming music, candle light and the soft crackling sound of the bubbles as they begin to slowly be overcome by the water and the air. Oh, I can almost feel it now.

I think it's about time I pulled out my bubble bath supplies and made plans to have a proper soak this week. A good relaxing bath can really recharge the body and mind and that's something I could use about now. Here are my bath-must-haves:

1. Tub Overflow Drain Blocker: even though these overflow drains are very important they prevent grown people from filling up a tub high enough to provide proper coverage of the body. These plastic covers attach to the tub with lots of tiny suction cups and then have a small vent at the top. It does a great job of keeping the water from draining out before you have even finished filling the tub.

2. Bath Pillow: I love this one because it not only provides a cushion for my head but also for my upper back. It's a nice luxury for anyone who wants to have a relaxing soak in the tub but it's absolutely necessary for those of us with fibromyalgia and chronic migraines. 

3. Bubble Bath, Bath Oil or Bath Bomb: I personally prefer bubbles or bombs because the oils usually leave a heavy scent behind on the skin that sticks around too long. When I buy bubble bath, I always buy the cheap stuff because it has very little scent that generally doesn't bother me and doesn't stick around after the bath. I like this aloe-vera bubble bath from CVS, doesn't trigger my head at all. 

4. Soothing Playlist: I always have a least a couple calming albums on my ipod that get a lot of play during dinnertime at our house that are also great for a bubble bath. I love this little rechargeable ipod dock that allows me to take my music with me to any room in the house. 

5. Candles: I like to use those small tealight candles in large numbers. The light never disappears into a hole created by the flame like with pillar candles. They are the perfect size and price for one-time-use in large numbers and they don't require special holders. I buy them in bulk super cheap so I can use 10 or 15 (or more) at a time. If my head is in rough shape I will forgo the tealight candles and instead use my flameless pillar candles.

 Okay, I'm officially ready for a bubble bath. Now I just need to find the energy to clean the tub and it'll be go time. 

Still Not Ready To Increase The Number Of Pills I Take

You may remember I've recently started going to a DO. Well, he suspects that part of the reason I'm having so much trouble gaining weight is that my body is actually having trouble absorbing food. I'm not entirely convinced that's why I'm struggling with my weight but I do suspect my body is struggling with some of the foods I eat - but that's a whole separate issue. In an effort to encourage my digestive system to behave better he has wanted me to try a few different supplements. Things like digestive enzymes, specific probiotics and the like.

I don't have a problem doing this. I refuse to try a bunch of medications without getting a specific diagnosis and some degree of certainty that the medication will solve my problem but I don't see the harm in trying the stuff he wanted me to try. If it helps, great. If it doesn't, no biggie.

The trouble is that, even after a year and a half, my body is still not ready to start taking more pills. Sure I still take pills every day, some days more than others, but I've been taking the bare minimum. For whatever reason it didn't seem to matter that these new pills were not medications with crazy side efforts, my body just rejected swallowing more pills. Every time I would go to take them, I could feel my stomach tighten with anxiety.

For a short time I made excuses for myself - it's hard to start a new habit around the holidays because my routine is off - I'll start tomorrow - I'll start on the weekend - I'll start on Monday - maybe if I store the pills over here I will remember to take them...

Nope. I just am not ready for more pills. I would rather try to fix any digestive problems with food. Sure, it's the slow method and certainly requires more work but I think it's the best way for me.

So Over Winter

It happened - it always does. The holidays are over but this winter weather will still be around for a couple months. At this point, I'm just sick of the cold, dry air. My hands and feet hurt 90% of the time because it takes them hours of bundled inactivity to warm. All of my skin is super dry, especially my lips, despite constant application of lotion. I'm so over winter and so ready for spring.

My head hurts, I'm sleepy and I just want to curl up on the couch under my down throw blanket and sleep until mid-March or so. Something tells me that is not the best idea but maybe I could do it for an hour or two. Yep, that's what I'm going to go do now.

Whimsy Wednesday

This cute little dog has incredible balance and great spirit. I love this clip.

Have a great day! 

8 Popular Things I Don't Like

I often find myself perplexed by the things that become wildly popular in our culture. Perhaps I'm odd or perhaps I'm just a hater but there is a long list of things I don't like that it seems like most people love.

Granite Countertops: Boy, you can't watch any home improvement or house hunting shows these days without hearing people parrot the necessity of granite counters. Everyone wants granite these days. Obviously, they generally have a pleasing aesthetic but I would never actually buy granite for my home. Why? Because there are other stone surfaces that are better suited for the kitchen and bathroom while still maintaining that aesthetic. Yet somehow granite has become a status symbol - the go to countertop. It just doesn't make any sense to me.

The Beach: Is there anything more universal than a beach vacation? Isn't that what we are all supposed to dream about, salivate over and strive for? Images and sounds of the beach are supposed to calm and relax us - becoming so overused it's practically a cliche by now. Honestly, I wouldn't care if I ever spent another minute on a beach. The inescapable heat and humidity, the filthy sand that sticks to everything, the painfully bright sunshine, the salt water, the crowds, the sting and stink of sunscreen, the bags of stuff you have to drag along with you in an effort to be more comfortable, the mind numbing boredom of sitting on the beach all sweaty and uncomfortable...this is all that comes to mind when I think of the beach.

Sushi: This stuff is wildly popular and I just don't understand why. The very idea of eating slimy, raw fish is hard enough to stomach. Add to it the risk of sushi being contaminated with bacteria, viruses and/or parasites when it hasn't been properly handled - and you never know how it has been handled. THEN add on the mercury content. Frankly, even if I liked the taste and the texture, which I don't, I wouldn't want to take my chances with sushi.

Real Housewives of anywhere: These "housewives" are wrong on so many levels. They are grown women who have way too much money, no respect for anyone, no perspective at all and they behave like out-of-control, spoiled, overprivileged, crazy people. They should be so ashamed of the way they behave. I think they are terrible examples of what a woman is and what a housewife is. My only hope is that young women who watch will see them as a warning and not role models.

Salt: We sure love salt in this country. It's in everything. I get that sodium is used to preserve most foods at the store but then we go and add in more of it for "flavor". Chips actually do have a flavor, as do fries, nuts, crackers, all foods really. I prefer to taste my food. If you need to jazz something up dip it in hummus or sprinkle herbs to add flavor. Marketing professionals have even discovered that people will pay more for something by simply adding "with sea salt" to a package. Can you imagine buying chips, crackers, nuts or french fries without salt? Well, that's what I try to do whenever possible. Why? Because I don't like the taste and anything that is salted - it just tastes like salt. But you wouldn't believe how hard it is to find these products without salt.

U2: Somehow I feel like I'm not part of the human race because I don't like U2. Okay, well I do like a couple of their songs - just a couple. That is not nearly enough for me to think of them as one of the best bands. I could name 50 artists and bands that I prefer over U2. I would never buy an album and certainly wouldn't go to a concert. They just don't move me and that's really what I want out of my music. You should see the reactions I get when I say I don't like U2. People just can't believe it.

Roller Coasters, Action Movies, Horror Movies and War Scenes: I lumped these all together because I don't like them all for the exact same reason. Very simply, I don't like to be scared or tense. That's not fun for me on any level. It's physically painful. Yet, most people love the thrill of these.

Sunshine: Who doesn't love a sunny day or a bright, well lit room? Over here - that would be me. This is 100% because of my chronic migraines. For me, a sunny day is an indoor day and the best kind of room is one where I can control the amount of sunlight that comes in. I totally get that sunshine is essential to the survival of almost every living thing on Earth so I don't wish it away. But that doesn't mean I have to like it.

Dr. Oz Continues to Promote Misinformation About Migraines

So I had the TV on in the background while working on some spreadsheets just a bit ago. The Dr. Oz Show happened to come on and wouldn't you know he did another story about migraines. He and his staff took the time to track down an actual human brain and cut it in half so he could point out the blood vessels that he claimed are responsible for migraines. He said that when the blood vessels dilate they hit nearby nerves, which causes a migraine. 

How is it possible that he is still perpetuating this myth?!?!?!?

Why won't he and his staff take the time to ensure they are providing accurate information? 

Every time I've seen him do this, I've taken the time to write in and tell him migraines are not caused by vasodilation and provide him with more up to date information on the cause. Clearly, the facts are not a priority. But hey, at least he had a nifty human brain on set and we all got to see him put on his signature purple gloves. 

This isn't the first time I've caught Dr. Oz providing inaccurate information about migraines on his show. I blogged about it November 1st, 2011, April 9th, 2013, and March 17 2014. I no longer seek out and watch the Dr. Oz Show because if he can't get this right, I feel like I can't trust anything else he says. The fact that I caught today's segment of misinformation is just dumb luck. But I did take the time, once again, to write in and ask them to get it right in the future. 

Obviously, I don't have any faith that things will change this time but I do have hope. If any of you would like to also write in and let Dr. Oz and his team know that the migraine community would like him to provide accurate information about migraines in the future, it sure is easy to do. Here is a link to his facebook page. 

Just as a side note: I found this interesting article online about the medical advice given out on both The Dr. Oz Show and The Doctors. Kind of makes me wonder what the point of these shows are, if not to provide sound medical information. Shouldn't there be consequences for medical professionals who behave so irresponsibly? I tend to think so.

The Challenge of Trying to Eliminate Wheat From My Diet

source

I think something in my diet needs to change. I'm not entirely sure what but I'm ready to just start trying different things. You may have noticed there is a ton of information out there about various foods, and tons of diet plans that sell you a book and promise, if you follow, their plan will solve all your problems. The food culprit is always different: red meat, any meat, GMO, sugar, wheat, diary, gluten, artificial sweeteners, legumes, potatoes, oh my! It's overwhelming. If you believe all of the food research being done then the only logical conclusion is that no food is entirely healthy and safe.

I find that hard to believe. 

What I do believe is that right now my body isn't entirely happy with everything I put in it. I've been a vegetarian for almost 5 years, much to the delight of both my body and my mind, so that will continue. But, more and more I find that I'm having trouble with wheat, sugar and with some dairy. You may remember I tried to cut out diary several years ago but found that I had trouble getting enough calories without it so I added it back into my diet. 

That's the big issue as I attempt to adjust what I'm eating - getting enough calories. I've been wanting to try eliminating various foods for several months but haven't acted on it because I didn't feel ready to dedicate the time and energy required to replacing the eliminated foods. At last I'm feeling ready to start researching and planning how to eliminate wheat from my diet. I choose to eliminate wheat first because I've been convinced that the wheat of today has been altered enough that it now causes problems for some people. I'm not talking about gluten here - just wheat. 

Wheat is tough to eliminate because it's in almost everything I eat - cookies, crackers, bread, pasta, bagel. I eat wheat with almost every meal and every snack. Let's break it down: 

1. I think it will be fairly easy to replace the wheat flour I use in all my baking with oat flour or one of the many other kinds of flour available in stores these days. The great thing about oat flour is that I can process it myself from whole oats. That's the easy part. 

2. I could replace my regular whole grain pasta with rice pasta but in doing so I will loose calories so I will need to find a way to add more calories back when I make a pasta dish. That could be tricky.

3. I'm going to explore if getting a bread maker and making bread without wheat flour is a realistic alternative to store bought bread. I just don't know much about these machines and what can be done with them. 

4. The toughest thing will be eliminating cereal, bagels and crackers. These are my breakfast and snack go-to-foods. Calorically, they provide a lot of bang for your buck, so to speak. Plus, they are yummy. I am totally unsure how I'll go about replacing these things and their calories. But I have to believe it can be done. 

I don't think this will have any kind of impact on my chronic migraines or fibromyalgia but I hope to see an improvement in my digestion and maybe less systemic inflammation. The hope is to feel better overall. I going to slowly start making these changes in the months to come as I continue to research ways to replace my beloved wheat based foods with calorie dense, healthy alternatives. 

I'm open to any suggestions you might have. 

The Result of a Wounded Spirit

I recently read an interesting post by Tammy L. Rome on Migraine.com entitled Migraine doulas Wanted. Basically, it was about how those of us suffering with migraines need empathy from people. Since we often encounter disbelief, pity and sympathy instead, we end up taking an us vs. them mindset. Here is a quick quote:

"Attachment theory teaches us that this mindset only happens after repeated attempts to connect, be understood and accepted. Polarization is a last-ditch effort at self-protection after all attempts to connect have failed. It comes from a deep wound inside the spirit of almost every migraineur."

This concept really struck a chord with me. Sure, I can relate. I put on a protective armor far too often these days when dealing with people. But what really struck me is how universal this is. I feel like we are watching the consequences of long-term wounded spirits unfold every day all over the world. We could replace "migraineur" at the end of that last sentence with almost any other group and it would ring true.

Being human is such a universal experience. Aren't we all wounded to some degree? All the more reason to be kind to one another.

Whimsy Wednesday

I had some trouble falling asleep last night and caught this little gem on The Tonight Show. Made me laugh so I wanted to share it with all of you.

Have a great day!

This New Year Marks the 5th Anniversary of This Blog

The start of the first full week of the new year always seems to mark the end of the holiday season. Things are now starting to return to normal and for me that means back to regular blogging. Between all the birthdays, holiday gatherings and a new year's weekend visit from my mom I've just not been able to do a whole lot of blogging the last few weeks. It always feels strange to be away for a period of time and then so good to return to it. I've missed all of you. 

The start of 2015 also marked the 5 year anniversary of this blog. An anniversary I can't help but feel good about. Especially when I think back to all the uncertainty I felt that first year. I didn't know how people would find my little blog. Even if they found me I didn't know if anyone would be interested in what I had to say. Heck, I didn't even know if I would have enough to say to continue for any length of time. I just started writing. I was going through something strange and horrible and I wanted to talk about it and find others who were living with chronic pain. 

Honestly, I'm surprised that I didn't run out of things to say years ago. Surprised and delighted because the past 5 years with all of you have been wonderful. 

I've loved sharing my journey. Even more I've loved getting to know the amazing women and men in the online chronic pain community. I've been blessed by your support, kindness, encouragement and experience. I've learned from you and grown as a result.

I want to extend a heart felt thank you to each and every one of you for the past 5 years.